Children And Epilepsy

Around 1 to 200 children in Australia have epilepsy. While we still have a way to go, there are many services and treatment available that can help children with epilepsy to lead rewarding lives.

Children with epilepsy need a combination of support, guidance and understanding from their parents, guardians, doctors, carers, schools and communities, as well as healthy opportunities to develop and become independent.

In order to support a child with epilepsy, it is important to understand the process of diagnosis and treatment, and the social aspects of epilepsy that can impact on a child’s life.

This section provides some of this information, as well as general advice about epilepsy and parenting. This section will also be useful to anyone looking for information on children living with epilepsy.

As a child grows towards young adulthood, it is likely that their needs and experiences will change significantly.

When To See A Doctor

If your child has a possible seizure for the first time, it is important to call an ambulance immediately, even if they fully recover.

If possible, it is worth recording any details of your child’s behaviour just before, during and immediately after the episode, as eyewitness accounts are often helpful when the doctor is considering a diagnosis of epilepsy. The doctor will often want to know:

• Where the incident occurred
• What your child was doing at the time
• How long any abnormal movements lasted
• What happened afterwards.

It is important to gather details about a potential seizure.

Diagnosis

After a child has a seizure for the first time, they are generally taken to hospital or referred to a children’s doctor or specialist for assessment.

Medical professionals who might be involved in the assessment include your child’s paediatrician (children’s doctor) and a paediatric neurologist with experience in the diagnosis and treatment of epilepsy. A paediatric neurologist is a doctor who specialises in brain, spine, and nervous system conditions and problems.

Your child’s medical history, any eyewitness accounts, and medical tests are needed to make a diagnosis of epilepsy by a specialist. The doctor may also ask questions about the child’s birth, other medical conditions and medications.

Medical test that are used in the diagnosis of epilepsy include blood tests, EEG (electroencephalogram), CT scan (computerized tomography) and/or an MRI (magnetic resonance imaging).

Tests may be performed to:

• Confirm the doctor’s suspicion

Based on the information they have from eyewitness accounts and their own observations, a doctor may suspect that your child potentially has a form of epilepsy. However, further testing and assessment is required to rule out other possibilities, such as syncope (fainting spells).

• Determine the type of seizure or epilepsy

Certain tests are capable of showing patterns of seizure activity, as well as where seizure activity is originating from in the brain.Tests can also return without any abnormalities. This does not necessarily mean that your child does not have epilepsy. For example, the absence of abnormalities in an EEG (electroencephalogram) might simply mean that seizure activity was not occurring when the test was taken.

• Determine the most appropriate treatment of your child’s condition.

The first line of treatment for epilepsy is anti-epileptic drugs (AED’s)Prescribing AEDs for children is not taken lightly, and your doctor will discuss with you the benefits and risks of each potential treatment. The recommendation of your doctor will be based in part on the results of tests.

• Determine the underlying cause of your child’s epilepsy

Some tests are capable of showing abnormalities in the brain that may be causing seizure activity. For example, neuroimaging scans like the (MRI magnetic resonance imaging) can identify structural abnormalities, injuries, and changes in blood flow associated with epilepsy, while an EEG (electroencephalogram) can identify the extent and location of abnormal electrical activity.

• Monitor treatment of your child’s epilepsy
  

Tests can monitor how your child is responding to treatment, as well as manage potential risks and side effects. For example, blood tests are sometimes required when taking AEDs to ensure that particular drugs are within a therapeutic range, and to detect any adverse impacts.

• Assess associated mental health or behavioural problems

While there are higher rates of mental health and behavioural problems among people with epilepsy than the general population, most issues are manageable with the right support. If you think that your child is experiencing mental health and behavioural problems, you can speak to your doctor about getting a referral to a suitable mental health professional, such as a child psychologist or psychiatrist, for further assessment and assistance.

Some types of epilepsy are called ‘syndromes’ because they exhibit a specific combination of symptoms. This depends on a range of factors including the seizure type, the results of tests and the response to medication.

Children And Anti-Epileptic Drugs (AEDS)

The first line of treatment for epilepsy is usually the use of anti-epileptic drugs (AED’s).These medicines are generally taken 1-2 times a day. The decision of whether to put your child on medication is a serious and important one, and is not taken lightly. Most doctors will tend to avoid prescribing medication until the child has experienced at least two seizures.

The treating doctor will discuss with you the benefits and risks of taking medication. The doctor will also consult with you about which AEDs may be suitable for treating your child’s particular form of epilepsy, including any possible side-effects. For most children, the benefits of taking AEDs are greater than the possible side-effects.

Finding the right medication takes time, and can be an ongoing process. It is very important that your child’s seizures are under control to ensure their safety, but also that side effects are managed and their quality of life is enhanced. It is possible that the first AED will not be the right one and replaced with another, and dosages may have to be adjusted to control or reduce seizure activity. Medication dosage may also change as your child grows. Sometimes, a combination of drugs are required as part of your child’s treatment plan.

Treatment is usually ongoing until the child achieves at least two years of seizure freedom. Depending on the child’s epilepsy syndrome and any known causes of the condition, the doctor may discuss withdrawing the medication. Sometimes the doctor will order a repeat EEG before withdrawing medication, although a normal EEG does not guarantee remission.

Dietary Management

The Ketogenic diet is a medically supervised diet that may be a suitable treatment option for some children and adolescents with epilepsy who do not respond to medication. Some controlled trials show evidence that the ketogenic diet is effective, although how much seizure activity is reduced will vary. The diet is high fat (80%), low carbohydrate (5%), with controlled protein (15%) diet that ensures the body will burn fat rather than carbohydrate and protein for energy, thus producing ketones. The build-up of ketones is maintained through a strict meal plan.

Before starting the diet, the child needs to be assessed by a paediatric neurologist and other experts at a ketogenic diet clinic (generally in a hospital setting), to determine if they are a suitable candidate. If they are deemed suitable, they can be put on the ketogenic diet during a 4-5 day hospital stay, where a ketogenic formula may be administered. The child will be looked after by a team of experts, and tests will be performed on admission and throughout the stay to monitor their progress. Parents are provided with information, advice and support to understand the diet and maintain it when their child is discharged from hospital.

The ketogenic diet is generally only suitable for children with poorly controlled seizures, and is not considered a long-term treatment. Evidence shows it can be effective for certain childhood epilepsy syndromes such as epilepsy with myoclonic atonic seizures (formerly known as Doose Syndrome or myoclonic astatic epilepsy), and can be implemented after diagnosis in conjunction with medication treatment. The diet has been used since the 1920s for the treatment of epilepsy, although relatively little is known about how it works. While it has been thought that the high ketone state (ketosis) caused by the diet contributes to seizure control, how this is occurs is still uncertain. Recent research has looked at how the diet impacts on the gut microbiota and neuron stability, and the influence this might have on seizure activity.

The ketogenic diet can be difficult to follow due to its strictness, although can be an effective treatment for some children with epilepsy with appropriate planning, support and commitment. The ketogenic diet is best considered as a treatment therapy and must not be initiated at home due to the potential for significant side effects. Children on the ketogenic diet need regular monitoring at a dedicated hospital ketogenic diet program.

Seizure Triggers In Children

Many of the risks associated with epilepsy in children are similar to those of adults. Some of these include:

• Illness/Fever

Fever-induced seizures typically affect children between 3 months and 6 years.

• Missed medication

If a child is prescribed AEDs to control their seizures, missing a dose (or taking doses at the wrong times) can lead to ‘breakthrough’ seizures.

• Flashing/flickering lights

While this is a less common trigger than many people think, it still affects approximately 3% of people with epilepsy. It is more common in children and adolescents and can resolve later in life.

• Lifestyle

Insufficient sleep can worsen seizures in some children.

• Hormonal changes/puberty

Children with epilepsy may experience changes in their seizure activity as they go through adolescence.

Talking To Your Child About Their Epilepsy

Children living with epilepsy need a combination of emotional, social and practical support from their parents and family.

Positive self-esteem is a crucial part of growing up. Just like in any other child, focusing on the child’s strengths and providing encouragement goes a long way. Being involved in discussions about their health can also give them confidence to face new challenges, although it is also important to be wary of information that might cause confusion or anxiety. The treating doctor, and possibly a psychologist, will be able to provide more specific guidance about what is appropriate for your child.

In general, it is important to:

• Be honest about your child’s diagnosis, and what it means
• Adapt information to their developmental stage and level of understanding
• Try to keep discussions as positive as possible
• Encourage your child to ask questions about their epilepsy, as well as express their concerns or worries
• Reassure your child that their epilepsy is being managed
• Let your child know what to expect from their seizures, and where appropriate, any treatments or management plans that are in place
• Reassure your child that they are not alone. Sometimes, it can help to remind them that many children have conditions that can require lifestyle changes and medication (e.g. asthma or allergies)

• Reassure your child that their epilepsy is not their fault.

You may be nervous about talking to your child about their epilepsy, for fear of making them feel sad, worried or concerned. However, in the absence of conversation, a child with epilepsy may make incorrect assumptions about themselves, and ultimately it is better to talk things through with them.

Education And Schooling

1 in 200 students in Australia live with epilepsy, and most experience successful pathways through primary and secondary education. As a parent or guardian, you want to know that your child is in safe hands, is getting the best education and is able to participate in all school and community activities to the best of their capabilities,

Your child may have an epilepsy diagnosis, but you may not consider that they have a disability. However, under the discrimination law framework, the definition of disability is stated broadly. Having an epilepsy diagnosis would be considered a disability in the context of discrimination law, as would other medical conditions such as asthma, diabetes and arthritis.

In some states, schools are required to provide appropriate emergency first aid response and post-seizure support when a student has a seizure, based on individualized Epilepsy Management Plan (EMP). However, as epilepsy can involve several challenges that extend beyond the seizure itself, some additional preparation may be necessary to ensure that your child is confident and capable of participating in school life. In many cases, this requires additional planning, conversation and understanding between children with epilepsy, their parents, peers, teachers and the school community.

Thankfully, there are various resources and training available that can empower a school community to support and include your child, as well as promote awareness about epilepsy. Epilepsy Smart Schools is an evidence-based program developed to support schools to provide a safe and inclusive educational environment for students living with epilepsy. The program helps schools to become ‘Epilepsy Smart’ by implementing epilepsy management plans for students with epilepsy, participating in epilepsy specific training, and holding events that promote better awareness and understanding of epilepsy.

While every person’s epilepsy and educational journey is unique, obstacles commonly faced by children with epilepsy at schools include:

• Not being able to participate in activities, such as sports and camps
• Missing classes/ school days
• Embarrassment due to seizures, seizure behaviours or accidents
• Anxiety, depression and moodiness, including anger and frustration related to seizures or medication.

Epilepsy can also impact on a child’s cognition and learning. For example, they might experience:

• Cognitive overload (e.g., finding it hard to keep up at school), which can cause seizures
• Seizures that can also make it difficult to concentrate and remember new information
• Memory difficulties as a side effect of medication
• Impacts related to a co-existing developmental condition (e.g. autism).

Beyond seizures and medication, epilepsy can have a broader impact on a child’s quality of life and experiences at school. For example:

• Children with epilepsy have higher rates of depression and anxiety, especially among those with more complicated epilepsy
• Parents perceived levels of stigma, low mood and worry, and unmet needs for information and support can impact behavioural difficulties in children with epilepsy
• Parents of children with epilepsy have also been found to have lower quality of life and higher levels of anxiety and depression compared to parents of healthy children
• Epilepsy sometimes co-exists with other developmental conditions, such as autism, intellectual disability, and cerebral palsy.

While epilepsy can have a significant impact on your child’s experience at school, the available support and resources can help you manage their educational journey and achieve positive outcomes. The Epilepsy Smart School website provides information and tools to facilitate family and school discussions and planning, which will provide a strong foundation to support your child throughout their school years. We encourage you to go through the resources and tools available on this website and discuss your child’s learning and support needs openly with your child’s school.

Positive Self-Esteem

Building a positive self-esteem is an important part of any child’s life. For children with epilepsy, this is sometimes especially important, in part due to a higher risk of depression and anxiety. However, encouragement and opportunity, as well as support from their family, school community and professionals, should help them towards a confident future.

All children require some supervision and direction, but if children with epilepsy feel like they are always being monitored, or being withdrawn from normal activities, this may have an adverse impact on their self-esteem. Students with epilepsy can generally participate fully in school life, including camps, excursions and special events. By using an Epilepsy Management Plan (EMP) , you can explain any additional supports that your child needs for certain activities. You may also need to work with your child’s school to develop a Risk Management Plan for these activities.

Talking About Your Child’s Epilepsy With Others

Talking to others about your child’s epilepsy can be a very positive experience. Sometimes, people may feel awkward or not know what to say or do, particularly if they are unfamiliar with epilepsy or have never witnessed a seizure. You can educate others about your child’s epilepsy and support needs, and most people tend to be understanding and supportive if they have the right information.

Children with epilepsy can have fulfilling social lives, just like anyone else. However, when your child is on a play date, it is important that you inform the other parents about their condition, and what to do during a seizure. This will help ensure your child’s safety and wellbeing, while promoting sustainable friendships.

Supporting Siblings

Your child’s epilepsy is likely to have an impact on other members of the family, including their brothers and sisters. Sometimes finding the words to explain epilepsy to a sibling can be difficult or challenging, but it is important to discuss it so that they feel included in their sibling’s journey. The way you approach discussing epilepsy will very much depend on the child’s age, level of understanding and ability to engage in discussion. It may also be influenced by your own family structure, cultural factors and social issues.

There are many positive experiences that come from being the sibling of a child living with epilepsy. Children who have a brother or sister who lives with epilepsy may possess greater compassion, have a better understanding of disability, demonstrate higher levels of loyalty, and be more open to diversity in our community.

However, some siblings can be affected by their brother or sister’s epilepsy and it is important to initiate and maintain open communication as soon as you think it’s appropriate to do so. Having open communication, recognising potential challenges faced by siblings, identifying how you can assist, and knowing when to seek support will greatly assist siblings in your family.

But it is important to remember that, like any family, challenges and issues will occur from time to time. This is a natural feature of growing up as siblings and developing relationships within the family.

If you think that your child needs some additional support there are a number of services you may want to access.  You may want to consider speaking with your GP, social worker or a psychologist.

Siblings Australia (www.siblingsaustralia.org.au) also has a range of resources for adult, adolescent or child siblings of children with chronic conditions.

Talking To Siblings About Epilepsy

When speaking to siblings, ensure that your information is honest and realistic. Try to be factual, use positive language and undertake discussion that is age appropriate. For very young children there may not be a need to discuss their brother or sister’s epilepsy as yet, and as they grow up it can be gradually mentioned at appropriate times.

When talking to a sibling you may want to:

• Explain how your child developed epilepsy, as their sibling may worry that they will also develop epilepsy or that they were the cause of it
• Discuss the language that your family want to use when it comes to epilepsy, so that the sibling starts to use those words or terms with others
• Explain that everyone is different, but try to limit over-emphasising your child’s epilepsy diagnosis or allowing it to become a key feature of their identity
• Remind the sibling that they have more in common with their brother or sister than they have differences
• Reassure the sibling that their brother or sister can be expected to do and learn lots of things, but that their epilepsy, seizures and treatments may mean they need some assistance and understanding at times
• Assist the sibling to understand and know what to say to others (such as friends) when asked about their brother or sister’s epilepsy.

Challenges Faced By Some Siblings

While there are many positive aspects to being the brother or sister of a child living with epilepsy, some siblings may encounter challenges or difficulties from time to time.

Of course not all siblings will experience challenges. Most adjust well, while others may have some difficult times. Some children may appear to be coping well but show signs that they are feeling stressed at times. There may also be different reactions depending on whether the sibling is younger or older than the child living with epilepsy.

All siblings react differently, although some challenges and concerns can include feeling:

• Like their sibling matters more than they do
• Fear that their sibling’s epilepsy may get worse
• That they are seen by others as the sibling of a child with epilepsy, rather than the individual he or she is
• Confused about any mixed feeling they have about their sibling (eg. love, anger, jealousy or resentment)
• Responsible for looking after and protecting their sibling (particularly at school or during peer activities)
• Embarrassed or sad about other’s reactions to their sibling’s epilepsy diagnosis
• Frustrated, sad or guilty about their sibling not being able to play in the same way they can, particularly if their brother or sister has any lifestyle restrictions
• Worried about the future for themselves and/or their sibling living with epilepsy
• The need to keep any worries or concerns to themselves and not burden parents or carers with these.

How To Support Siblings

There are many ways that you can support and guide your child and encourage him or her to share their feelings and thoughts about being the sibling of a child living with epilepsy. Some of these include:

• Calmly and honestly answering any questions your child may have
• Encouraging your child to talk freely about their feelings
• Letting your child know that it is OK to feel angry, sad or frustrated at times
• Celebrating your child’s personal achievements
• Supporting your child to connect with the siblings of other children living with epilepsy (peer connections)
• Seeking professional support for your child if you feel that he or she is not coping.

Sometimes your son or daughter will communicate their feelings with you directly. But at other times they may not and instead display concerns through certain behaviours, including:

• Withdrawing from social situations or peer activities
• Excessive ‘acting up’ and/or attention seeking
• Being overly concerned with being the ‘good child’ or ‘people pleaser’ in order to achieve recognition and approval.

Support For Families

There are various support services available for parents of children with epilepsy and their families. The Epilepsy Centre of SA & NT has a range of support, information sessions, training courses, social worker, nurses and events that may be beneficial.

For parents/carers, it can be really useful to meet and talk with others in a similar situation. Often other parents can relate to how you feel and provide insights into what you have experienced or what may potentially lay ahead. Throughout the year, we organise a range of activities and events that provide parents/carers/families with opportunities to connect with others, as well as have access to free or low cost events and activities.

Books For Children

Ages 3-10years

Trigger and His Friends by Katrina Germein (2014) $10 incl  postage and handling

Contact The Epilepsy Centre of  SA & NT on 1300 850 081 or email to enquiries@epilepsycentre.org.au

Milo’s Day at School by Shawnee Walker (2017)

Sometimes I Get the Wiggles – Be an Epilepsy Seizure Hero by Andee Cooper (2016)